My adult sons’ different answers when asked about their needs
Now that they manage their hemophilia care, how can I best support them?
Last night, I had very little left in the tank. The past few weeks have brought unique challenges and responsibilities that left me weary. As I started thinking about my column for this week, I realized how much time I’ve spent writing about when my children were small. But what do my adult sons with hemophilia need from me now?
To my horror, I came up blank. I don’t know what they need from me as a caregiver.
A twinge of sadness overwhelmed me for a few moments. My responsibilities were clear when the boys were young. They needed Dad to hold their hand when a needle pierced their skin to infuse factor VIII, a clotting medicine, or when facing an internal bleed that wouldn’t stop. I had a purpose in helping them through the confusing world of hemophilia.
Now, the little boys I once knew have grown into capable adults. My oldest son, Julian, is 28, and my youngest, Caeleb, is 19. They now manage their own healthcare and no longer require my constant intervention. The joy I feel in seeing them take responsibility for their medical needs is indescribable. It’s a testament to the values my wife and I instilled in them, and it fills my heart with pride. Yet amid this pride, I can’t help but feel a sense of loss, a longing for the days when they needed me more.
What do my adult sons need from me?
Since I couldn’t answer my initial question, I knocked on Julian’s door. He invited me into his room, and I asked him, “Son, what support do you need from me regarding your bleeding disorder?”
He stared at me for a few minutes, struggling to respond. Finally, he said, “Dad, I cannot think of anything you can do to help me. I order my medicines and schedule appointments at the Ted R. Montoya Hemophilia Program and Treatment Center [in New Mexico]. Everything is covered and good.” I acknowledged his answer and asked him to contact me if he thinks of anything in the future.
As I started to leave his room, Julian asked me, “Dad, do you have a few minutes to help me look at the insurance exchange online? I need coverage and have no idea what to look for.”
I smiled and said, “Of course.”
Then I thought to myself, “Aha! Julian answered my question. He may not need me to help him manage the daily ins and outs of his bleeding disorder, but he does need me as a resource.”
Later, I knocked on Caeleb’s door, and he invited me into his lair. I asked him the same question I’d asked Julian, but his response was different from his brother’s.
“Wow, Dad. That’s a fascinating question,” Caeleb said. “I don’t need as much now, as I noticed our relationship changed when I became an adult.” Puzzled, I asked him what he meant.
Caeleb replied, “When I was young, our entire relationship centered around hemophilia. As I grew up, my bleeding disorder took a back seat to other issues I faced. I felt like our connection became stronger when life no longer revolved around hospitalizations, horrible bleeds, and other hemophilia-related events.” I thanked him for answering my question and smiled as I closed the door.
I tried to sort out my sons’ responses to my question. One needs me as a resource while living with his bleeding disorder, while the other appreciates a growing relationship. Either way, I play a role in their lives. Yes, they may not need me for issues regarding hemophilia, but they do need me as their father. I can offer advice and appreciate their growth and how they move in this world.
When all is said and done, I realize that my role as a father has evolved into that of an encourager. I’m there to provide support when times are tough and to celebrate when they achieve something remarkable. I’m the proud father of Julian and Caeleb, and that continues to be the greatest blessing in my life. No achievement of mine will ever be as significant as my bond with these extraordinary men.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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